How do you answer people when they ask you about your vitiligo?
I like to be as upfront as possible. The other day my buddies girlfriend asked me what was wrong with my hands. She thought I had been painting recently. She was curious. So I told her I have vitiligo, the autoimmune disease. She has arthritis so she knows what autoimmune means and we moved on to another topic.
This is just a recent example of something that happens on a regular basis with me. My experience is that the only people that ask about the lack of pigment on my skin are the people that care. There is sometimes a note of confusion or concern in their voice, sometimes an awkwardness. But never has anyone asked about what is wrong with my skin unless the were genuinely interested in my well being. I appreciate the concern and while I don’t always appreciate having to explain that I have a disfiguring disease that will only get worse, I do like that people feel comfortable enough to voice their questions and concerns and I really like getting the disease out in the open.
I think this is different for adults. Kids can be mean. Some people commenting on the blog talk about how hard it is to make friends with highly visible vitiligo. This can be particularly hard for people with darker skin tones where the contrast is stark.
What can you do? It is possible to define yourself as something other than the person with the skin disease. Even for me, with this blog and my friends knowing about my disease, it’s not something that gets much discussion. Generally I don’t talk about it, or think about the fact that I have vitiligo. I find that the more attention and head space I give to my vitiligo the more than it brings me down. The more I focus on the things that matter the less attention it gets. If I focus on my work, my friends, on food, on fun, vitiligo becomes far less important. It really does not have to effect me. It does sometimes and yet I have a measure of control over whether or not I allow the fact that I have a disease to be significant. I am able to exercise control over my perspective and so I can also exercise control over other peoples perspective. This is a strength we all have. We live in worlds of meaning we create together. Just because I have vitiligo doesn’t mean my world is coming to an end.
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21 Comments
Hi there Keith
good site!
I believe I have vitiligo. I had exzema as a child and developed a few white patches, some dissapeared and some didn’t – I didn’t ever go to the DR. My dad has vitiligo and my aunt. After about 15 years I have started getting patches again on my feet – I think it’s mainly from abrasions that caused loss of pigment which then spread on my feet.
I went to the dermotologist who was terrible. He told me maybe I do have vitiligo and maybe I don’t – didn’t recommend anything and told me to keep my fingers crossed I didn’t. Wow – that was worth the $200!!! NOT!
Anyway I do believe it’s down to diet and health. In the last year I have been quiet stressed and haven’t been following a good diet. I think the emergence of more patches is down to that. I also feel that yoga is a great way to boost your all round health – and hope that in concentrating on that will help.
I live in Australia – and am always in flip flops – people do look and wonder what’s happening to my feet. I don’t have time to camoflage but might start. Also any pointers as to how you determine if you do have vitiligo or just ‘vitiligo prone’ – which is what the Dr told me?
Hey Katie,
Love that you wear flip flops. I remember reading in several places that in many cases vitiligo appears on skin that has suffered an abrasion.
I went to two doctors. Both are experts in the field of dermatology, one ran the dermatology dept. at a couple hospitals and the other taught dermatology at Stanford University. Neither mentioned anything about being vitiligo prone. I think you either have it or not.
Vitiligo effects people differently. I do think stress and poor diet are contributing factors. As vitiligo is an autoimmune disease, anything that causes too much inflammation can be problematic.
Have you thought about getting tested for food allergies? Often times people with vitiligo have problems with their intestinal track and have gluten sensitivities. This is the case for me.
The thing about doctors is that they really don’t have much to offer people with vitiligo at this point. Perhaps over the next few years new treatments will be introduced but for now, most vitiligo treatments increase the risk of skin cancer. This is a trade off I am not interested in. Though each person has to make their own call. I understand that some people really dont want to deal with two skin colors.
I have thinking about taking yoga classes myself. Do you enjoy yoga or is it just a way to stay healthy?
Best,
Keith
Hi,
Thank you for being so open and honest on your website about your vitiligo. I was diagnosed about 2 years ago and I’ve had a lot of ups and downs in dealing with my white patches. It’s hard to find many people who are speaking out about their experiences and I think your blog is great. It’s a difficult thing to deal with, so knowing there are others out there experiencing similar things is reassuring.
The sun finally came out today (I’m in the Bay Area too) so I started thinking more about this today, which is how I ended up on your site. For me, I feel self-conscious occasionally, mostly about my face and hands. It’s something I struggle with, but mostly I’m trying to focus on being healthy, lower my stress level, and accept that this is happening.
Thanks for this site and thanks for writing about your experiences. I have really enjoyed your site!
Camille
Hey Camile,
Thanks for reading! It is always encouraging to hear from people that are in the same situation. I totally understand about the self image struggle. It is an endless struggle.
Even today I was looking at my hands and wondering what people think. This site has been a cathartic exercise for me. Am glad you enjoyed it yourself. Also, if you ever want to meet up for coffee, let me know. It would be good to talk to someone, in person, who struggles with this disease too.
Best,
Keith
Its Rachel again, sorry i keep posting. Luckily my vitiligo is fading. I am so happy! Its still a little bit there, and i have no idea but when i went on vacation into the sun, it looked as if it got color and faded. I made sure not to let it burn. When i was going “down hill,” I found your site, and it reassured me everything was going to be okay! Thanks so much!
-Rachel
Hey Rachel,
Please comment anytime you like, it is always good to hear from you.
I am glad things are going well. Keep on smiling!
Keith
As a sufferer of vitiligo, I’m interested in trying to work out some timescale for how fast it spreads. I’m aware it’s different from case to case, but may I ask how old you are? I’m 20 and it’s progress has been relatively slow, thankfully. But I do worry about the future.
Hey Cam,
I hear you on the concern. I cant even begin to answer that for you. Everyone is different. I think there is a correlation between stress levels and vitiligo growth.
You can’t worry about the future. It helps no one, especially not you. You will be fine. I got the disease when I was your age too. Seriously, its not as bad as you think. People are accepting, understanding when you help them to be.
You are stronger than you know,
Best,
Keith
It has been since last october since my first white hair appeared in my eyebrow and now its just a small bunch . Anyway some of my facial hair turned white you cant tell and now a couple of hairs in my scalp turned white . My face had 6 vitiligo patches and my lips were starting to get affected . I am now down to just one patch due to narrowband uvb treatment and corticosteroid cream which i have been doing since february this year . my hairs are still white . The thing I dont get is that the white hairs and patches were all on the same side of my face , isn’t vitiligo meant to have a symmetrical appeareance? The patches were barely larger than 5 cms. I have also now noticed a few really small dots on the head of my penis .All are on the right side . Is this a specific kind of vitiligo?
I sure vitiligo has something to do with a persons lifestyle . I havnt been stressing and i work out . i eat healthy focusing on antioxidants and i take amino acid supplements.Anyone with vitiligo should not let it stress them out because in my opinion the mind can heal anything.
I was wondering if you or anyone that reads your website knows if too much UVB treatmeant can lead to spreading of Vitiligo? I have spots on the top and bottom of hands and wrists. The past year I have been receiving NVB treatmeants and my wrist is now starting to spread. I have been going four to five times a week and wondering if maybe I should cut back to three days a week on treatments. Any suggestions or experience anyone has?? Thanks so much.
Hi Leanne,
Thanks for writing in. I also was treated for vitiligo with UVB. For me, there was repigmentation. It was working. Though because the treatments were so often, and kept getting longer, almost an hour visit, 3 times a week and because UVB treatment does increase the risk of skin cancer, I stopped.
I am not sure if your continued depigmentation is related to the treatment, though I would suspect not.
Hope you get the answers you are looking for,
Keith
Can i Rebond my hair if I have VITILIGO?
I dont think vitiligo would preclude you from rebonding your hair. Vitiligo has to do with pigment.
Best,
Keith
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Hi, I have vitiligo spread randomly on more than half of my face. I am a fair skinned person. I have been using a skin lightening cream containing sepi-white msh to even out the tone of my face. I sometimes apply the cream on the white spots by accident and it seems that the white spots have gotten WHITER. Is this possible? Is it possible for affected skin to become whiter despite them being pigment-less? Also, I was thinking of applying sunscreen on my regular skin only and going out in the sun so the white spots get sunburn. It might even out the tone… what do you think? I understand its dangerous because I’m at higher risk for cancer but please help I have been very depressed.
Mike
I started with a tiny patch In my inner thigh and it has now spread to mist of my inside thigh. I am very very paranoid and stressed that it will spread to my other body parts and especially terrified that it will go to my face. Is it common for it to spread to face when it’s only on the inner thigh? I was prescribed a steroid cream by my dermatologist and I am going to start it today. This site was very helpful
Hey Karli,
If you have vitiligo, then it is likely that it will spread. These are the facts. What you choose to make of them is up to you. I would encourage you to be as positive as possible.
Having vitiligo and maintaining your self love is hard and it is possible. It may require some changes to you assumptions about what makes you lovable and beautiful. It may challenge you to reconsider what makes you attractive.
If you are taking a topical steroid I would also encourage you to consider dietary changes. Perhaps explore whether or not you have food allergies. Explore with a nutritionist how you can be the healthiest person possible. Imagine you had a cold. Would you go eat whatever you wanted? Or would you try to be healthy and take vitamins too?
I am glad you found this site to be helpful. Comments like yours encourage me very much. We all need encouragement from time to time.
Best,
Keith
Hey Mike,
I hear you on the depression bit. It is hard sometimes. It gets easier if you work at it. Don’t give up on a positive self image.
Areas of skin without pigment will not tan, so not using sunscreen on those areas will not help. If you don’t have pigment the skin can’t get whiter.
Hope this helps.
Best,
Keith
Hi… I’m 32 years old and have suffered with this since I was 16 years old… Ive seen specialists who have been no help at all. It covers the majority of my body in large patches and people stare all the time… It does get you down but I just think
I could have a lot worse things in life?!? I’m due to have a baby in November and just hope that my child does not have to suffer like me…. Only time will tell. Xx
I have had vitiligo for 40 years and nr 70-80% no pigment, last year i spent 2 weeks in the caribbean (I am british white female) I noticed brown freckles appearing within the white patches, this year again I spent nr 3 weeks in the caribbean and my back is now nearly fully recovered as are my arms and the rest of my patches are taking on the freckled appearance. My question is, why would this happen and would it mean if I use a UVB light the pigment would return in full or could it be the fact the sun over there is different to the uk/europe, which of course could make it a very expensive cure to keep returning!.
Hey Mia,
Thanks for letting me know. I am very encouraged to hear your story because just this week I have started spending more time in the sun with just my shorts on.
I have noticed some repigmentation from last year after periods of staying in the sun.
Why does this happen? Not sure. The sun does have vitamin d, which some people with vitiligo are deficient in.
Check out this story: http://vitiligo.50webs.com/
Thanks!